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Advocacy Update for SMA Community — Priorities for 112th Congress

04/28/2011

Dear SMA Community,

The past few years have yielded significant increases in federal awareness of and funding for SMA. Our grassroots reach — and national impact — has created critical momentum for SMA research and therapy development efforts; and we are committed to accelerating this momentum in the coming months. Over the past four years, our SMA community has worked cooperatively and collaboratively to achieve this unprecedented level of awareness of SMA and SMA-related research among policymakers and lawmakers. These efforts have brought significant, tangible results:

From 2008-2010, the base level of funding from the National Institutes of Health (NIH) for SMA-related research increased by 60 percent. Over the same period, the overall NIH budget increased by just six percent, meaning that funding for SMA-related research grew at 10 times the rate of the overall NIH budget.

Over one-fourth of the U.S. House of Representatives and one-fifth of the United States Senate publicly expressed support for an increased federal investment in SMA-related research by cosponsoring the SMA Treatment Acceleration Act.

Looking ahead, the NIH’s involvement and contribution to SMA-related research continues to grow thanks to the establishment of a new NIH program, the “Network of Excellence in Neuroscience Clinical Trials” (NEXT), which will create a clinical infrastructure for neurological disorders. The NIH has indicated that the first research project to utilize the new NEXT infrastructure will be a biomarker validation study of SMA. Identifying a biomarker for SMA would represent a significant step toward accelerating efforts to create effective treatments for SMA. This is the first ever solicitation by the NIH for a SMA-specific research study.

We believe that this recent and continuing increase in support from the NIH is due to the unified federal outreach by the SMA community over the past four years and your remarkable efforts in support of this outreach. It is critical that this harmony be maintained in order to protect gains made and to successfully pursue future advocacy goals.

As you know, the primary focus of our community’s advocacy agenda over the past four years has been the SMA Treatment Acceleration Act. After much consideration of the current political environment and the ongoing SMA-related research activities and opportunities inside and outside the government, we have decided not to pursue reintroduction of the SMA Treatment Acceleration Act at this time. Several goals of the Act have been achieved (e.g., the NEXT network).

But our SMA community is not slowing down and we remain strongly and actively engaged in federal advocacy and public policy through several initiatives that aim to accelerate the development of effective treatments and cures and which will require your continued support and backing:

In addition to working directly with the NINDS on the specific goals for the NEXT SMA initiative, we will use our broad support in Congress to push for additional funding for SMA research through the annual congressional appropriations process. SMA-related research funding from the NIH has increased significantly in relative terms, but there is much good science that could be funded through additional dollars.

Another important initiative is newborn screening, which scientists believe will play a critical role in developing therapies. We are working with the federal officials responsible for newborn screening policy and advocate for all babies in the U.S. to be screened for SMA.

Additionally, we are expanding our advocacy efforts relative to patient support and care. It is critical that affected individuals and their families have access to the necessary services, supports, and equipment available through federal programs such as Social Security and Medicaid. It is crucial, too, that children have access to a free and appropriate public education. Furthermore, we are beginning efforts to improve the services available to affected individuals transitioning into adulthood, with a focus on medical care needs, insurance coverage and employment.

Please know that your continued involvement and active participation in our advocacy efforts is critical. Much works remains to be done and we will continue to hold Congress, the NIH and other government agencies accountable. We will reach out to you very soon to request your assistance in support of several advocacy efforts that support our ongoing work to identify a treatment or cure for SMA.

Thank you again for your incredible support of our unified SMA community.